SOME SPECIFIC FASCICULATION QUESTIONS

[Dan]

HI

I know neuros Do not like to make the distinction between ALS TWITCHES AND BENIGN FASCICULATIONS, yet PLEASE try to answer my questions even if the answers will be relevant only for the most part of cases:

1.What  pattern is more typical for the initial twitching of als(initial!): A. Random twitches that do not seem to settle in a specific muscle (RANDOM POPPING - "a twitch here a twitch there but many of them...
or..  B. specific areass/spots of fasciculations that are widespread, but every muscle have specific spots where ONLY there , you find twitches.

*I never get a twitch again in a plcace  where It has twitched
never 2 twitches in the same spots for a long time. there are many of them, but each time, different spot, different muscle
MINE IS A.

* based on your clinical experience, which pattern is more typical for the inital twitches of als (A OR B), when you examine the patient first time. (I read somewhere that in als , each muscle has specific spots/areas of twitching, and these spots of recrurtent fasciculatins ARE found  in clinical exam - so B is more appropriate. IS it?

2.I know that als has assymetric onset by definition. well, are there cases of Benign fasciculation you have seen of assymetric pattern also? How common is that?
I was diagnosed with benign fasciculations, yet 80% of my twitches are left sided (left leg and arm) so I would like to know ,base on your experience, how common is assymetric pattern of benign fasciculations (more twitches in one side or limb)???
ARE most benign fasciculation patients symmetric or assymetric?
**** DEAR NEURO, I KNOW THAT MOST NEUROLOGISTS DISLIKE THESE DISTINCTIONS, BUT PLEASE ,  TRY TO RELATE TO THESE 2 POINTS as specifically as you can, especially to PATTERN A,B , PATTERN YOU FIND MOSTLY IN ALS AND MY PATTERN(A), PLEASE!

BEST REGARDS, DAN!  

[Peanut404]

A related discussion, Fasciculations was started.

[GrammaJewelry]

A related discussion, BFS....I have been diagnosed was started.

[lisa]

HI--HAS ANYONE WITH BFS EVER BEEN TOLD THEY HAVE BRISK OR HYPER REFLEXES? I ALSO HAVE BEEN DIAGNOSED WITH BFS. I HAVE BEEN BATTLING THIS FOR 7 MONTHS. JUST WHEN I THINK THE TWITCHES ARE GOING AWAY THEY COME BACK FULL FORCE. ALL STARTED AFTER A BOUT WITH THE FLU AND DOSES OF ANTIBIOTIC. I THINK THERE MAY BE A SOME SORT OF CONNECTION. I TOO, HAVE HAD 2 NEGATIVE EMG'S, BUT AFTER READING POST ON THESE FORUMS, MY ANXIETY LEVEL STILL RUNS HIGH. HOW CAN IT NOT? I AM A REGISTERED NURSE AND HAVE NEVER SEEN OR HEARD OF THIS SORT OF THING UNTIL IT HAPPEND TO ME AND OF COURSE I GOT ON THE INTERNET, BUT I DO FIND IT INTERESTING HOW MUCH WE ALL SEEM TO HAVE IN COMMON, OUR SYMPTOMS, ETC. I AM  SEEING MY NEURO THIS WEEK FOR FOLLOWUP  AND HOPE ALL GOES WELL- I WOULD LIKE TO GET ON WITH MY LIFE, BUT SOMETIMES IT IS HARD TO IGNORE WHEN YOUR MUSCLES ARE JUMPING ALL OVER LIKE CRAZY.

[nancy]

Caden-Your elevated CPK levels are likely stress related as is the BFS.  As long as the twitching/pain is causing no problems that are debilitating-I wouldn't worry. Maybe get more exercise-go for a walk with your wife!

[margaret]

I am also a twitcher and it has helped me to read all these messages because I didn't realise there were so many of us about.   I had a computer for Xmas last year and the following few weeks spent hours on end playing silly games.   Then my little finger and ring finger of my left hand went numb - not my right hand which I used on the mouse for playing games. After two months all my fingers of my left hand started to twitch and within a couple of weeks I was twitching all over.   I notice it all the time when I am resting, particularly in bed at night.   I get cramps and pins and needles in my legs too.   Diagnosis: Myokymia.   Still getting worse all these months later.   Had one EMG - awaiting another.   I'm scared - not of ALS but of some irreversible nerve damage.   Can anyone else relate to these symtoms, please?

[Dallas]

What is MGH?

[Caden]

I have been diagnosed w/ BFS.  I have twitches all over.  Also have small local pains in muscles that go away in a few seconds, and sensations that a cramp is coming on, but no cramp does.  My neuro is baffled by the fact that my CPK is elevated.  Does anyone else out there know if CPK can be elevated in BFS or Cramp fasciculation syndrome?  

Caden

[Mark Bellariva]

Hi everyone. Hi had twitches for over three years.
I have tried B-12 and potassium for some time, but the only time I got some resolts was after consuming a small amount of alcohol. It really seems to solve the problem for some time. Why?

[Suzie Lee]

Im another one of those worriers.  My fears started in Feb.  98 when I had cramping all over my body and then twitches in my legs that made me feel like my 2 legs couldnt hold my body.  Ive had 2 emgs since then which didnt  detect even the  fasiculations.  I have lost a pant size and still feel weak and the neuros cant tell me whats wrong so of course I tend  to fear the worst.  The Dr sent me to a shrink even though I lost the reflexes in my knees.  I really feel for the people   that dont seem understood bye their drs.  Like its all in our heads.  I wish there was more research done on these devestating diseases so we would have to worry ourselves sick.

[skipatro]

Was doing more research on this twitching thing - have any of you taken Cipro - which is an antibiotic in the last year?  Found another web site where several people had taken it and then developed the twitches.  

[skipatro]

Another twitcher here - terrified also like the rest of you.  My question is, do you notice that the areas that have been twitching - for instance your legs or arms, seem not really weak but more like tired out - like you have been working out?  I can still walk fine, lift grocery bags, etc... type 100 wpm, but my legs just feel "pooped" out after a day of twitching.  I am scared about this because I am not sure if it is what would be considered "weakness" or just my muscles are tired from all the twitching going on.  I am presently being worked up by a neuro, but he is not much help in giving me answers.  I can honestly relate and sympathize with each and every one of you at how terrifying this is.  I am beginning to think, after reading so many different postings on various web sites that twitching itself is a disorder that needs to be looked into more.  So if you can give me some feedback, I would really appreciate it.  Als, does anyone else notice that their twitching stops when they consume alcohol?

[John]

how long were you on the ativan..& what was your dosage?.i too got got widesread twitching after i quit taking ativan!!

[John]

how long were you on the ativan..& what was your dosage?.i too got got widesread twitching after i quit taking ativan!!

[John]

how long were you on the ativan..& what was your dosage?.i too got got widesread twitching after i quit taking ativan!!

[John]

how long were you on the ativan..& what was your dosage?.i too got got widesread twitching after i quit taking ativan!!

[john treher]

its strange..for the first time in my life im just now experiencing widespread twitching & i quit taking ativan just one month ago..im having an emg very soon to dtermine if its something really bad or just a temporary withdrawal symptom the twithching started 3 wks ago

[Also Twitching]

Dan - I noticed something in your original post that I didn't see addressed by any of the responses I read.  I mentioned that you recently began taking Paxil.  A very low dose of Paxil was prescribed for me recently for the prevention of tension induced migraines.  About a week after beginning the Paxil, I started noticing some very pronounced twitching all over my body.  My doctor refuses to believe there is a connection, but if you do an internet search on Paxil side effects, I'm sure you'll find, as I did, many other Paxil patients who've experienced the same thing, and worse!  My twitching has yet to be officially diagnosed, but I am convinced that the Paxil plays a role.

[ellenc]

This entire thread has become surreal! Let's lobby for a
" twitching" forum on MGH...moderated by dan3! Just a little humour to lightn things up !

[peggy]

I am new to this site.  I have been "twitching" for about 3-4 weeks now.  It started with pins and needles in my hands and feet that lasted for a week, then the twitches came.  All over my body.  I am a occupational therapist and fear ALS too.  I have worked with patients with the dx.  Can anyone direct me?  i have had an MRI, and the doc fesls it is stress related.  I have hypothyroidism.  What about Vitamin B12 and blood work?  Any responses will help.  I feel very anxiou about this.

[jim k]

HI I have had myokymia since jan 83.  Which is what i think your husband has.  I have gone tho the same thing with doctors at first until they had more people popping up with it. It mirrors ALS.  I take 400 milligrams of dilatin to ease the twitches and vitamins and stopped caffine.  Caffine makes it worse.  Any questions please ask me.  By the way i still lead a active life.  Don't let it get you down.

                            JIM

[grace]

I have to talk to dan. My husband was completely normal and healthy and started getting muscle twitches weakness, tingling etc...  he has had three emg's by an expert has seen 5 neuros had mri's blood test everything you could imagine. he even went to an ear nose and throat dr and had a tube shoved down his throat and the dr. told him there are no signs of als. the folowing day my husband went back to the ear nose and throat and said he didn't put the tube down far enough. The dr. did it again and told him there is no signs of als, they got in a shouting match and my husband was kicked out if the office.The ear nosr and throat dr called my husbands interist and told her that my husband is suffering from ocd. My children watched this whole thing unfold and it has been very hard. I finally got him an appointment with a world renoun als speciaist to put his fears to rest. The dr. (from columbia prespeterian in ny city) knew right away my husband needed a shrink. He talked to my husband for 40 min and then gave him an exam for 45min. he told my husband he was fine and couldn't have als because he didn't have one symptom of it. My husband believed that for about three hours and then returned to his beliefs. He said the dr. didn't know what he was talking about. this dr is one of the best als specialists in the world and my guy doesn't believe him. since then he has seen a dr who took this drs place while he went on sebat. this new dr also world renoun told my husband he didn't have one symptom of als.

He also told my husband that the muscle between the thumb and the index finger is the first to go. He also told him that by the time you have muscle twitches and weakness it's impossible to have a normal emg, my husband has had three.  He's on meds for depression and axiety and our lives have been terrible for 13 months. after all this proof he is still in denial, as a matter of fact, i'm starting to wonder if you are my husband using a false name like i did. Is that you? Please listen to me dan try to get on with your life. My husband is throwing his life away, i don't know how much longer i can stay with him. i did not proof read so please forgive mistakes

[Elizabeth Jane]

Dan, Lot's of folks care about you!  you are so lucky..and you are fustrated with your problems of twitching, etc. I think I have read some postings on the fibromyalgia forums and others but I did not realize you were so fustrated for the right answers!  I have anxiety! due to my family life and health problems..my daughter has anxiety and needs meds for it..panic disorder as well. I posted many times on the mgh forums a few years back about my vision..and visual problems..and fibro..and sle..and cns..and..and it goes on with no real answers to ones questions; that is not the ones you feel are the right ones..I have accepted my condition to a point where I can adjust to the changes going on with my vision and visuals..but that is not to say I am not still looking for answers, I am..but must "wait and see" attitude is the main  phrase...OK...let it go for now...give yourself a rest and then proceed again in another type of venue..research is one!  Chat forums are another...do not give up..your disorder will show it self in one way or another...but maybe? no als which is fairly rare...Good luck, Dan, and take care, see you on the forums, Elizabeth Jane

[SS]

Cut this out! If you know that Dan has been on 200 times then so have you! To everyone- Don't judge. Any one can be OCD when they are twitching
or have some other scary symptom. The internet can cause temporary OCD if you are not careful. Its called OVERLOAD!!!!!! Too much conflicting information. If you actually had to get up and go to the library you wouldn't find so much **** to scare yourself!! You'd find a couple of good sources(like this site and MGH) but not get completely overstimulated with 3000 different sites and personal stories with 3000 different sides of ALS. The threat of having a horrible disease is real for all of us. But forbidden knowledge of the details can ruin your life!

[Savannah]

I'm interested in the notion that bfs is just caused by irritable muscle fiber. I have bfs, an essential tremor, plus benign myoclonus. I am in no way worried about ALS, as I've already dealt with all this for 4 years without worsening (except the myoclonus is worse), and meds have reduced it by 50%. SO I wonder what CAUSES the nerve fiber irritability? I've heard of viral theories, but I don't think that applies to me, as I wasn't sick before all this. I border on hyperthyroid, but it's now under control. My symptoms began overnight, and I think I must have suffered some physiological insult that permanently damaged my nerve fiber! I don't think it's ongoing because nothing really shows up on blood labs. Could it have been related to an elevated thyroid? Or a low calcium level? Can these things permanently "do in" your muscle fiber? If not, what can. Thanks.